[procaare] Re: Pre-6th HCC: Taking care of caregivers (17)

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Re: Pre-6th HCC: Taking care of caregivers (17)
HIV/AIDS Caregivers Need Care too - Marites Sison
***************

[Moderator note: This article was originally posted in Inter Press Service, November 29,
2002 and posted in SEA-AIDS on December 8, 2002]

HIV/AIDS Caregivers Need Care too
Marites Sison

MANILA, Nov 29 (IPS) - Larri Hayhurst held a throw pillow with both hands, laid it on her
lap, buried her head in it, and let out a scream.  "There! That's how you deal with the
big noise, " says Hayhurst. "The relief that a cushion and a scream like this can give you
is amazing. And, nobody can really hear you."

Hayhurst, an Australian nurse and AIDS educator, dispensed this advice to family members
and volunteer-caregivers of Filipinos living with HIV/AIDS during a closed-door workshop
organised here this week by the Remedios AIDS Foundation, a local non-governmental
organisation. During the workshop, Hayhurst encouraged caregivers -- mostly relatives of
Filipinos living with HIV/AIDS -- to explore their own feelings and not to deny them.

"It's normal to have negative feelings (about HIV/AIDS). You don't have to feel guilty or
shamed when you feel them," she stressed. "There is such a thing as caregiver pain and you
need to let it out."  Even men, she stressed, "need to have a good cry." She encouraged
male caregivers to ignore society's dictates that big boys do not cry.

Hayhurst says that too often, caregivers bury their feelings of anger, frustration,
despair and helplessness, which often lead to burnout in caring for people with HIV/AIDS.
"There's something in the (Filipino) culture where it's almost impossible to work out the
"I" because there's always the "we," she says.

The workshop, the second in a series funded by the Ford Foundation, was meant to provide
AIDS caregivers with a venue to "look inside themselves," says Dr Jose Narciso Melchor
Sescon, executive director of the Remedios AIDS Foundation.

"Filipino caregivers tend to be superman and superwoman. When they help out, it's all out,
even at the expense of self," says Sescon. "Yet they need to know that the real essence of
caregiving is caring for one's self first. It's learning to deal with your own set of
feelings before helping others, otherwise it can lead to more harm than good. They also
need to learn that there are limits to caregiving."

The value of a workshop for caregivers cannot be underestimated, especially in a country
where the family is main social support system. Compared to other Asian countries like
Burma, Thailand and Cambodia, the Philippines still has a low prevalence of HIV/AIDS at
seven adults per 10,000 according to the United Nations Development Programme. But experts
have warned of a "major epidemic" in the future.

Aside from high-risk exposure among Filipinos ages 15 to 24, there are other factors that
could trigger an epidemic such as cultural and religious barriers that deter open
discussion of risk behaviour as well as the promotion of condoms and safer sex.

Hayhurst, who runs a 100-bed hospice in Sydney, Australia and has been a consultant on
palliative care for HIV/AIDS patients at the San Lazaro Hospital here, has identified some
cultural issues that hinder Filipino caregivers and patients from dealing squarely with
the issue of HIV/AIDS.

"The main issue is the terrible shame and stigma that they live with. It's incredibly sad
and causes huge suffering," says Hayhurst. "I have to say this with respect, but there's
something in the culture and within the value system where my shame becomes your shame. If
I do anything which brings me disgrace, it affects the entire family."

'Hiya', the Filipino word for shame, often results in "one big collusion of silence," adds
Hayhurst. "The silence around what's happening is so disempowering and only compounds the
suffering."  This culture of shame and silence is "deeply entrenched," says Hayhurst and
needs to be addressed. "We need to liberate people from the shame. The patients are
already deeply shamed on their own, to add an entire family's shame on top of that is
terrible."

In its "redeemed state," however, Hayhurst says that the close-knit family structure in
the Philippines can offer an entire support system for a person living with HIV/AIDS. "The
potential of the family is beautiful to tap. The sure knowledge that someone will be there
is just something that we don't have in the West."

Sescon agrees that there are still "cultural sensitivities" in the Philippines that need
to be addressed, not just in the case of HIV/AIDS patients but also their families,
caregivers and the entire society as well.
"When we encourage families to talk to psychiatrists, some would say 'but we're not
crazy)," says Sescon. "So we have to course the counselling through social workers."

He says that even caregivers need to have "respite" from situations of caring for their
relatives with HIV/AIDS, but this is just not readily available to them because of limited
resources in taking care of their kin.
Caregivers need to be part of the whole equation when dealing with the issue of HIV/AIDS
but they are not considered a priority because most of the attention usually goes to the
people with HIV/AIDS themselves, he adds.

"Unlike South Africa or Myanmar, the Philippines is a low-prevalence, low-priority area,"
says Sescon. "Funding agencies just don't see they opportunity to set up structures when
it's still manageable, before the epidemic sets in."

--
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Conference in Dakar, Senegal (December 8 - 12, 2003).
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